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FARAFARA Cure FA

Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Gavin Oldaker

Gavin MTCName: Gavin Oldaker

Age: 29

Where do you call home? Western Washington

What is your education? What are your plans for the future? I finished a general Associate's a few years ago. I have a couple certificates in AutoCAD... When I'm cured, I'd love to major in Architecture, while minoring in Acting. Until then, I write here and there. Fiction. Nothing solid yet, but I'd love to put out something in my time waiting.

Who do you live with? I'm single, but I would love to find myself in a relationship. Right now, I live alone. My parents help me out with rent. It's pretty cool. Although it's a lot of work; nearly too much, and it's lonely sometimes.

What's a typical day for you? My typical daily routine involves reading, getting to the gym, watching TV/playing Xbox and cleaning. It seems I'm constantly cleaning. Those are the nuts and bolts of my routine anyway.

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Denise Lenhart

Denise 3Name: Denise Lenhart


Age: 43


Where do you call home? Ankeny, Iowa


Education: I did some college but no degree.


What is your relationship status? Do you have children? I have been married for 20 years and our daughter is almost 21(that makes me feel old!) We also have 3 fur babies, cats, who are good company for me but only when they feel like it!

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Carolin Benesch (Caro)

Carolin 4Name: Carolin Benesch (Caro)

Age: 27

Where do you call home? Münster, Germany

Career: After school, I started working for a travel agency, taking a licensing exam. I worked there until 2016. Since 2017, I'm not working to have enough time for all my therapies and sports because of this disease.

Who do you live with? I'm a single girl and live alone in my beautiful flat.

What's a typical day for you? My day normally starts at 9 am with a short but powerful breakfast at home. (Meals are very important!) Every day, I have therapy. I do physiotherapy once a week, speech therapy twice a week, I meet with a psychiatrist once a month, and I spend 1-2 hours with my personal trainer every week. In the evening, I often meet friends or my sisters, who live close to me.

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Robert Rhodes

robert rhodes 3Name: Robert Rhodes

Age: 34

Where do you call home? Oklahoma City, Oklahoma

Education (degrees): Bachelor's of Science – Industrial Technology and Associate's of Applied Science – Computer-Aided Design

What is your relationship status? I'm single. I currently live with my parents, but I pay rent monthly. I also help around the house when I can.

What's a typical day for you? I am employed full-time as a mechanical engineer at a manufacturing plant that makes ball valves for the oil and gas industry; work five days – between 46 to 48 hours per week. My primary emphasis is CNC tooling and chuck jaw design, but I have experience in product and quality control engineering as well. My daily tasks often vary greatly. With a combined production floor of over 2 million square feet, I do a significant amount of manual labor - beyond office work. I have been with my employer for 9 ½ years.

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Yasin Rehmanji

Yasin smilingName: Yasin Rehmanji

Age: Turning 15 soon

Where do you call home? Ontario, Canada

Education: almost finished Grade 9

Who do you live with? I live with my mom, dad and older brother (who is more of a bother). It is just the four of us in my house, but I have my grandparents, uncles, aunts, and cousins around too.

What's a typical day for you? On weekdays, I go to school, come home and do homework. On weekends, I do various activities depending on the time of the year; I go horseback riding in the fall and spring, swimming in the summer and do sit skiing in the winter.

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